WAR

mojogirl67 said:

Anger

I‘m not consume with anger nor will I let it take the joy from my life. By the same token, I can’t turn a blind eye to it all either. Buddy, I have seen the same “profit” percentages at my cancer center and others visited by my husband. You have to educate yourself and decide what’s best for your treatment, well-being, and life. Can you imagine the jobless people if cancer was “cured”?!? What would Trump do with that, lol? Port will be out Wednesday morning and I will be in my mountains Wednesday night.... hope you are hiking the hills somewhere..I’m not far behind you.. Hugs, M

My fingers don't work well on a tiny phone screen..lol..sorry for the typos

JanJan63 said:

I understand your anger and

I understand your anger and frustration. I feel it, too. But I never think for one minute that 'big pharma' has the cure but won't give it out. I have a number of reasons why this doesn't make sense but it's too long to post on here. There will never be 'a cure for cancer'. They're all too different and the people with the same cancer respond differently as you've seen on here. The doctors don't know what will be the most effective for any individual or what the side effects will be. The researchers have come up with cures that work great in mice but are useleaa in humans. Also, they don't like using people in studies unless they're end stage. It's not like studying if a cold medicine works or not, if it doesn't it doesn't mean the subject will die.

One of these days there will be breakthroughs, there has to be. People all over the world are looking for the cure(s) and are coming together to share their research so that nobody wastes time on something already tried and failed. The latest breakthrough is finding a way to get chemo and immunotherapy into the brain. The brain is enveloped in a barrier that has prevented anything from crossing it until now. 

It's frustrating and infuriates me that it exists. I wish it was an entity that could be made to suffer for all of us. But it's been around since the dinosaurs and it's a tough one to treat no matter what they choose to do.

My friend's horse was just diagnosed with skin cancer. It's on his sheath which is the outside of the penis. The vet says that it's common in horses where the pigment is different colours on the sheath. He's a black and white pinto. How does that make sense? For him they're going to cut out the tumour and see what happens. Another friend had her brown and white pinto get skin cancer on her neck several years ago. It's kept under control with a cream. White horses are prone to skin cancer. How does that make sense? I've mentioned on here before about other friend's horse getting colon cancer and having to be put down because by the time they found it the tumour was huge. With all the things they say can give us colon cancer from burnt meat to processed foods to just eating too much meat, how does a horse who is a total vegetarian get it? And if it was environmental, why didn't any other of their horses get it? This was about ten years ago and none have gotten it since, either.

I share your frustration. I've lost my mom, two aunts, my brother, my uncle and a dog all to cancer. My dad who smoked since he was a kid died of enphysema (sp?) but not lung cancer. It makes no sense so many times.

Anger is a good outlet sometimes, and the most appropriate response to this horrible disease. Embrace it when you need to. It will keep you in fighting form.

Hugs, 

Jan

Jan, this is an interesting article on immunotherapy. I thought of you when I read this and the struggle you had financially because of the cancer. I think what these companies do and the havoc they bring to cancer patients who struggle to stay alive and pay their bills is criminal and they face no consequences and control the market. This article can be found on Vox...

...Patients with health insurance can be denied coverage for immunotherapies, even when it’s recommended by their oncologists. But even when they aren’t, the list prices are so high that the copays can be exorbitant. A patient might face a 25 percent copay, which means they’re getting the drug at a 75 percent discount. When the price tag is upward of $10,000 a month, that leaves patients on the hook to cover at least $2,500 per month. And that’s prohibitive for many people.

These drugs cost so much in America because companies can charge that much

This brings us to the next question: Why do these drugs cost so much? To get to the bottom of it, Emanuel had an interesting thought experiment in a recent Wall Street Journal op-ed. Drug companies typically argue that the cost is related to how much they had to invest in research to develop the drug. The CEO of Novartis, maker of the immunotherapy drug Kymriah, said the R&D costs of the drug were about $1 billion. But Emanuel didn’t buy it:

That’s certainly a big investment, but it is much less astounding when compared with the drug’s anticipated revenue. Based on Kymriah’s list price, treating just 2,700 patients would allow Novartis to recoup its entire investment. Even with significant discounts for many patients, it wouldn’t take many treatments to turn a considerable profit.

... Producing the immunotherapy requires more than three weeks of laboratory manipulations for each individual patient.

But according to researchers at the University of Pennsylvania, the total cost for removing, reprogramming and infusing the cells into each patient is less than $60,000—just one-sixth of the $373,000 price tag. Production costs do not seem to be driving the stratospheric drug prices.

So he came to the conclusion we have arrived at Vox many times: The drugs cost this much because in America, drug companies are allowed to charge that much. And they reap handsome multibillion-dollar profits as a result.

In other countries, governments exert much more influence over the entire health care process. That allows them to negotiate directly with drugmakers. The government sets a maximum price that it will pay for a drug, and if the company doesn’t agree, it simply loses out on the entire market.

The United States, by contrast, has long taken more of a free market approach to drugs. Pharmaceutical companies can haggle over prices with a variety of private insurers as well as selling to the government. What’s more, Medicare, the government program that is the nation’s largest buyer of drugs, is actually barred from negotiating drug prices. That gives pharma much more leverage.

So drug companies here do what any other profit-maximizing company does — they try to get the highest prices possible without going so high that no one will buy them. And that status quo has led to cancer drugs that cost more than homes.

The public has paid to help develop the drugs they can’t access

One final disturbing aspect of the cancer cost conundrum: Public money helped pay for many of the drugs that patients can’t afford to access.

In a recent analysis, published in the journal PNAS, researchers found that American tax dollars helped fund the basic research that went into every single one of the drugs approved by the Food and Drug Administration between 2010 and 2016 — including several cancer immunotherapies. All told, $100 billion in National Institutes of Health research grants helped advance the science behind those drugs.

So the Nobel Prize this week is a reminder of the great promise of these drugs — and the incredible, lifesaving science that led to their discoveries. But it should also be a moment to reflect on who is benefiting from them and who isn’t. How will the 1.7 million Americans who are diagnosed with cancer per year gain access if prices keep rising and we don’t address this cost conundrum soon?

JanJan63 said:

I'm in Canada so the cost

I'm in Canada so the cost hasn't been an issue at all. My husband and I figure I've cost a couple of hundred thousand so far for the times in the hospital and the treatments and all the tests. I can't imagine having to make a health decision based on if I can afford it or not. I'd be dead if we had to pay for what I've had done.

Most countries do have health care coverage and are trying to find a cure. This is one of the reasons I don't believe that the cure has been found and is being suppressed. The countries that pay for this stuff wouldn't allow it. The only downside to being treated here is that Canada is slower to accept new therapies and drugs for anything. So there are a few things we can't get here yet.

I really feel for the Americans who have to deal with this. It's just beyond thinking. I feel badly enough that we're having finance issues due to my not being able to work and owing money from the business I had that I hed to sell once I was diagnosed without costing more money. Our taxes here in Canada are higher than in the states, probably due partly to healthcare costs.

I've seen stories of a spouse trying to repay bills accrued when their spouse passed away long after it happened. How sad is that. It's horrible and shouldn't be happening. It's just not right.

We do have to pay for some meds I take but we have insurance that covers 80% of the costs, even for my ostomy supplies.

Jan

I am so glad you are in Canada. I've never read much about the healthcare system there but from what you've shared, it sounds like a lot of your care has been covered. That's wonderful. I know of so many here who struggle over paying their bills or buying much needed care and medication. It shouldn't be that way. I don't necessarily think a "cure" is hidden ,but I know that a lot of wonderful research on less severe treatment with potential is squeezed out by major drug companies. As far as anger, I will not let it steal the joy out of life...it never has. Love and light have always carried me thru and I will always reach for both. The life picture is much bigger and I keep my focus on that and things I can control. This is a God-awful disease I hope to see disappear forever before my life is over. Until then, I will fight this in a way that makes sense for me and gives me peace as each of has to do. Wishing you good days and beautiful rides into the sunset...

SandiaBuddy said:

Hiking

I have a big-event-hike coming up in a little more than a week.  I do not want to say anything in case it does not work out (health and/or weather) but I will post if it is successful.  As an aside, I do think there are some countries that are working on treatment modalities that are not motivated by profit.  Taiwan is one that comes to mind.  They do not have the resources of big pharma, yet they are trying.  I am sorry you are frustrated and I relate to your frustration.  Sometimes I feel the same frustration with politics.  But I am relatively powerless to change the situation.  It is the same thing with the health care system.  For me, I think the retreat to nature (and meditation) is the best answer.  I am glad you will be back in the calm of your mountains soon.

I totally agree. I think the majority of us are walking around with a phone or device glued to our hands 24/7. The mountains and woods literally renew my spirit without fail. Meditation is much easier for me there, but I am practicing to find "that place" no matter where I am at. Someone I know built a deprivation/floating tank. Some of the information I have read and that they have shared is incredibly interesting to me. Hope your hiking even is a "go". I will be back in my mountains tomorrow evening or Thursday morning at the latest..Hugs, M

NewHere said:

We Are Have The Right To Be Angry Whenever We Feel Like It

I had an experience that I have mentioned here a few times.  In hospital overnight, got a huge bill, my insurance covered less than 10%.  Almost wound up back in the hospital from a heart attack seeing it. Called the hospital and they told me they were accepting the payment from insurance as final due to a contract.  I told them just bill me that rate and I could spend 30 days in ICU for less than what I pay for health insurance during the year.  And also asked how canl they stay in business collecting 10 cents on the dollar.  I would be out of businsess under that model.  So I totally get the outrage in this.  

It is absolute BS though I can buy the same drug in Canada or Mexico when I am traveling at pennies on the dollar compared to the US.  We had to pick up drugs a few times when traveling and they were less than a co-pay we had with our insurance back home.  I understand the marketing and getting what the market will pay, but c'mon.  And I am a capitialist at heart, but the margins are crazy.  

You probably have seen Steven Brill article in TIME.  Link is here If not it is another eye opening read.   Adam Ruins Everything did a piece on the craziness of billing.  I think if someone had a cure, it would be out there and a ton of money to be made. The rules and regulations to get from theory to market is crazy.  We have people dying, speed up some the trials or let people take a risk. And I find it hard to believe this https://www.nytimes.com/2017/08/12/health/cancer-drug-trials-encounter-a-problem-too-few-patients.html - perhaps ease the trials a bit.  Obivously the plural of anecdote is not data and controls are needed, but not enough people with cancer who can be in trials?  C'mon.  I understand there should be protections and overseeing things in general, (including the FDA) but the costs of getting a drug to market is nuts.   Every drug out there has the same warning label that has been copied and pasted, with some modifications.  Unreal.  

But anyway, in general, I am of the opinion of JJ, I do not think cures are being held off the market for a variety of reasons, even though there have been instances of drugs being supressed.as you mentioned    I admit I have tendency to be naive and want to believe humans are better than that.  Of course there will be excpetions to that - we see it everywhere where profit is ahead of everything.  But a cure would also be a cash cow.   For example,  ff reshi mushroom worked, but it needed to be a special blend grown in certiain conditions, they could make a mint.  The same applies for other things, such as Hyperbarics (a subject I love and believe in) and Keto Diet.  Let's say The Keto diet would only be approved with certain specific guidelines, sources and precise mixtures.  Blue Apron from Memorial Sloan Kettering would be a huge money maker.  I would not risk buying from grocery store if it was keeping me alive.  As an aside, what is interesting is that the author of the book  mentioned AIDS.  (echoing Kazenmax a bit, but it instantly jumped out at me based on the year of the book and me losing friends to AIDS when it all started in the 80s and seeing how treatments changed.)

These are tough diseases.  Even if chemotherapy works, very often it will stop working.  My doctors have been really great with everything - answering every quesiton, a ton of recommendations and tips, from exercise to intergrative medicine and running tests, so I am seeing it from a different lens which I readily admit.

In this day and age we see so many breakthroughs across the board and funding for so many diseases.  My watch has more power than what was available when we put people on the moon.  It is really difficult not to get angry in all this, for many of the reasons you mention.  We are bombarded with information about cures and scams.  And are never sure what the truth is.  And I get angry at myself at not finding everything out there or dismissing things and perhaps killing myself because of it.  I have pretty much ignored drinking my own urine to cure cancer.  Am I stupid not to do it?  Amd I arrogant?  And I get angry.

https://www.mirror.co.uk/news/real-life-stories/im-drinking-urine-cure-cancer-6673361

And I come around now to Sandia's point - do something to ease the anger if you can.  Stress and anger have their places, but at some point the negative effects kick in.  (But feel free to ramp it up as needed.)  I go running (which I hate, but beginning to like kind of since it has helped keep me alive) or do something indulgent as needed.  Buy a more expensive meal than normal, things like that.  I love the water, oceans, rivers, whatever, and now the weather is warming up I have a chance to eat outside at some places where I can see water.  Yes it is the Hudson in NY, so not the white sand beaches with blue water of other places, but it still works.  

I hate seeing you having all this on your plate.  Your name alone is what I think of you.   Be angry as needed.  Use it as a focus for the Warrior in you.  But your positive attitude and strength you have expressed in your posts from the beginning are also great assets in all of this.

Nor will it ever to me. I'm a "fixer"..someone who dies inside to see another hurting or being taken advantage of. I have had to reign that in and realize that I can't save the world. I am in a much better place than I was three years ago when I was fighting to keep my husband alive as he fought this **** of a disease. I realized some things just don't make sense and I will never have the answers or be able to fix it all.  I'm not perfect with it, but I have learned to let the thoughts come, (and most of the time, lol) let them go. Getting the port put in and doing chemo was an extreme struggle for me. I could not look at the port most days. Having it and doing chemo went against the grain of my soul and spirit. They would not consider me for a liver resection without doing chemo first. If I wanted to live, I had no choice..the tumors were large and I would have died. I now know what my husband felt when he said, "I'm so tired of being sick and tired." I thought I knew at the time but nobody will ever know until they wear the hat. It is wonderful that you have had such a supportive treatment team. None of my doctors would discuss alternative therapies, supplements, etc. If a tumor were found in me tomorrow, I know that chemo is not the route for me. I think we are all unique like snowflakes but similar in so many ways...the human existence.  I truly respect everyone's choices they make for themselves. Of course I don't want to have a recurrence but the thought of having chemo again scares me more. You would think the threat of being Stage IV and not pursuing chemo would fill me with fear. It has been the opposite. I have more peace than I have had in the past six months. I intend to honor and indulge my "gift of existence" every singel day. I hope everyone here finds that moment of peace somewhere in their journey...Hugs, M